On my Face Book page I am friends with a gentleman on a poetry page. I have been following him and his thoughts for some time. He was married for over 50 years and lost his beloved wife to Alzheimer’s Disease.

I got permission from Stanton to share his poem with all of you.

We all have lost someone in our lives and if you have not experienced this, you are so lucky. My heart could relate to so many things he was writing about as far as Al goes. Here it is. I hope you enjoy or feel the open heart.

I went to see Al today and I did not get to stay very long. When I walked in to the room his face was a frozen mask. I see this much more often than I used to. He still has his moments of alertness but they are beginning to grow thin.

I saw a boo-boo on his forehead and asked him what happened, as I saw blood seeping through. He stated that he had run into the bathroom door last night through the night. I said wow, that must have hurt, and he nodded his head yes.

It is getting difficult to see what kind of mood he is in with his face in a blank stare, but he did tell me he was sorry that I had come out, because he did not feel well, and he wanted to sleep so bad. I saw his eyes nodding more and more and so I let him go to sleep.

On my way out the nurse said that he is becoming more confused and I agreed with that I had seen it also. He is using the wheel chair more and more, and I know that he feels like everyone is laughing at him. I told him I understood, but it was alright to use it. It is better to ride the wheel chair instead of falling. The nurses and aides are having to push him up by the arms to keep him standing. His poor legs are just getting tired.

It looks odd to see a six-foot man not be able to hold those legs up, but we can not see what is going on inside of the muscles and nerves. I so wish I could just stop it all for him. He is napping more and more, but yet at times you can see him joke around with the nurses and smiling. His words are soft-spoken now and the words all become together, making it hard to understand what he is saying. He is stuttering quite a bit now.

The nurse just called me and said Al is really confused tonight. He can’t remember her name and he asked for pain pills, and she said she would go get him some. She told me when she went in his room to give them to him he was sitting stark naked. She asked what are you doing, and he replied waiting for my pills. She said naked? He said, am I naked?

My poor brother. My heart breaks at what this nasty old mean Parkinson’s Disease is doing to him. My friend tells me he is going to get so much worse, and I believe her, because she has so much more experience with the disease than I do, but I am fighting it. I don’t want to see it. I don’t want it to get worse. I want my baby brother back. What if he forgets who I am………

Today Al had an appointment with an eye doctor. Less than a month ago, I had taken him for an eye exam, and he had an increase added to his bifocals. About two weeks ago, he started complaining of blurred and double vision. We made a new appointment with a doctor for a second opinion.

I picked up Al and took him to his appointment. He had difficulty getting out of the car. I am noticing small changes in his movements, and had been told that a large vein was now a culprit for him, as the muscle around it is being squeezed from the Parkinson’s Disease.

After the doctor examined him very carefully, he gave us the news. The P.D. is working very hard on Al’s muscles behind the eyes. The muscles are becoming weak and slower. Al can not move his eyes as fast as the brain is telling them to move, therefore, leading in to a stage of not being able to focus. The other thing the doctor said is that Al’s cataracts are now significantly showing. The doctor became silent, and then excused himself from the room for a few minutes.

When he returned, he said he had consulted with our own eye doctor, and the two said that Al could not have them removed. Al could not lie still enough for this delicate but easy situation, nor could he be put to sleep to have this done. It seems that Al has nothing to work with to fight this, and eventually he will not be able to see anything. I pray desperately for God to take him home before this happens.

Daily Prompt

by michelle w. on October 25, 2012

Take a complicated subject you know more about than most people, and explain it to a friend who knows nothing about it at all.

I don’t know much more than anyone else in the world, but I may know a little more about Parkinson’s Disease and from working in the hospice world and caring for end of life patients, I feel like I may be more aware of what happens to ill patients.

Parkinson’s Disease is an illness that affects the brain. It comes completely geared to appear in five stages. The first stages through fourth, are sometimes easiest to deal with. The patient may be able to still work, and lead a productive life, with some noticeable tremors, and some gait issues.

As each phase comes to life, the ability to stand straight becomes harder as the body stiffens. The brain does not let body parts know what to do next, the legs stiffen and the feet can be found to shuffle along,and so falls can become a part of every day life. Eating may become difficult due to the tremors, which can be in the hands, legs, head, or sometimes the complete body will tremor.

This in turn takes its toll on the body and makes walking harder. There are medications that PD patients can take. They can not cure PD, but they can slow it down, but sometimes the medications themselves, can make it worse in the end result.

In the fifth stage of PD, walking becomes to the point of having to have help to walk, such as a caregiver, walkers, and sometime wheelchairs. Dementia along with confusion, tears, depression can be a part of every day life.

The fifth stage can bring incontinence, constipation, lack of eating skills, tube feeding, bed ridden, and can also stop the recognition of family and friends. PD does not take the patients life. Usually a lung infection or bad cold is the culprit that ends the life in the end.

As a caregiver, it is very important to have a compassionate heart with ill patients. The patient is suffering, sometimes not realizing why this is happening to them, or the fear of death may become an obsession along with fear.

A caregiver’s life can be quite stressful while taking care of the patient, a caregiver can actually forget to look after their own selves. You can become worn down, tired, stressed out, cry easily. It is very important that the caregiver takes good care of themselves, and takes the breaks that are offered. You are not there just for the patient, or for the money you earn, you are there also for the family who is suffering right along with the patient.

To be a caregiver, it takes more than a body showing up to do a job. There has to be a desire from the heart to help this patient have the best quality of life he or she can have. Someone to hold their hand, talk softly to them, read to them, and sometimes to just sit with them. When you can have this along with the daily care of feeding, bathing, dressing, doctor’s appointments, bill paying, you are a caregiver that everyone wants to have when the time in their own home, someone is needed.

As for me, I am tired, and I carry a lot of stress, but I would rather take care of my own brother who has PD, then to let him suffer alone in a nursing home, for as long as I can do it. I am gathering great memories, and will have these to ponder back on when this part of our lives are over.

We all need to feel loved and needed. ill and elderly can revert back to children, and we can all remember how much we wanted to fit in, and be accepted and to never feel alone.

I have taken care of a lot of patients, geriatric, mentally challenged, disabled children and adults, and the dying patients, but in my own personal opinion, PD takes the cake. It is the worst illness I have ever come across. There is no ending date, such as a cancer patient. PD patients can live long lives with this illness. There also is not that much information about PD, making it harder to get professionals to understand what things are like at home.

I hope that one day when my brother’s time is near to go to see heaven, that he knows I did my best, and that I loved him very much.

Although, I had been nominated the day before, and had paid my many thanks to Paula, I could not let this go by without paying my thanks and recognizing her as a wonderful blogger. Thank you Vow!

Here is a little bit about this beautiful blogger lady. She cares for her husband who has Parkinson’s Disease.

About us…

Vow for Parkinson came as an idea from a friend. She pointed out the good it could do to share my husband’s story and how I handle his disease as a wife/med student. Vow For Parkinson is part of http://www.parkinsonpr.com, a webpage in spanish dedicated to inform about the disease.

The doctor’s nurse did call back, and relayed a message from the doctor to me. He stated that one of the side effects from Parkinson’s as it progresses along, is wild sweats. Sometimes nothing else will trigger it, just the disease itself. He also said that Parkinson’s holds two side effects that hide until one day they pop up. One is a lung infection and the other is a bladder infection.

He explained that the entire body is going to suffer from this nasty disease, and that for some time the only things I will notice is the bending from the waist, tremors, and freezing, along with slow movements. In the latter stages, he says it is not a common thing for Parkinson’s to take Al’s life, it will be the hidden triggers, infections of the lungs, pneumonia, or some other organ in the body gets infected.

He told me to keep an eye on him, and if he continues the heavy sweating, I need to get him in to see him or to the ER for blood work to find where the infection is hiding. Al hasn’t felt good all day, and says the only place he hurts is his legs, but yet he says he doesn’t feel well.

He doesn’t want to ride his scooter, or go anywhere. He just wants to sit, and now laying down. He is cold, but probably because I have the air turned on lower to keep him dry, and he is a little clammy.

So, I am just watching and have prayed for God to give me a signal if he needs further attention by a professional, and if not, let him rest comfortably.

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